John Perry (Sligo-North Leitrim, Fine Gael)

I thank Deputies McHugh and Doyle for drafting this important motion. Duchenne muscular dystrophy is a degenerative muscular disease which causes progressive weakening and wasting of the muscles. It can affect adults and children. Some forms of the condition arise at birth or in childhood, while others may not manifest until later in life. The disease results in reduced life expectancy.

A number of Irish families are directly affected by Duchenne muscular dystrophy. A boy in my constituency, whose father and grandmother are in the Public Gallery, has recently been diagnosed with the disease. Having a child diagnosed with such a serious illness is one of the most difficult and sad experiences any family can endure. Like any parent, I ask myself how and why this can happen to any child but specifically the child in question. I also ask myself what can be done to fix the problem and whether the child can be cured by medical science. Beyond this, there is faith and the hope of a miracle cure.

Regrettably, there is no cure for Duchenne muscular dystrophy at present. The parents of children with the condition look to current research in the hope that an interim therapy will be found to help delay the progression of the disease, while science searches for an understanding of and cure for the condition. I strongly urge the Minister to make the maximum possible financial provision for services to Duchenne muscular dystrophy patients and their families. Community services, such as physiotherapy and occupational therapy, aids and appliances, such as wheelchairs and orthopaedic footwear, accessible housing and transport, and access to education, training and employment are critical to the quality of life of patients and their families. In addition, easy access to medical services, such as neurological assessment, respiratory and cardiac monitoring, and treatment are also critical. These services form the basis for a worthwhile quality of life for patients at home and in the local community. They are also an important support for the parents and family members of patients with the disease.

Better management of Duchenne muscular dystrophy has been shown to increase average life expectancy. While these developments greatly add to quality of life, they cannot prevent or stop the progression of the condition. For this reason, there is a real need for ongoing research. Promising research projects are in place in other countries. It is important in this area of research, as in other areas, that we invest in more co-operative research with other countries. Such co-operation will ensure Irish patients with Duchenne muscular dystrophy will be an integral part of current clinical trials of new drugs and Irish medical personnel are at the leading edge of new treatments and therapies.

I ask the Minister to ensure there are no obstacles to funding from Ireland being used in projects that are led predominantly or perhaps fully outside Ireland. We need to be fully plugged in to the leading research projects investigating rare disorders such as Duchenne muscular dystrophy. As we cannot fund this research alone, let us set the standard in enthusiastic co-operation with other leading research teams.

As a long-time advocate of better co-operation with the United States, I strongly suggest that we should have at least one co-operative research project with the leading researchers there.

While the removal of obstacles to funds from Ireland being used in projects outside Ireland is important, the real challenge is to increase the funding into DMD research. In this connection, I would ask the Minister to support this project.

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